Palliative care access still lacking

When Heather Cavanagh’s father found out he had incurable metastatic prostate cancer, he was sure about one thing: he didn’t want to die in the hospital. So together with her brothers and her mother, Cavanagh set out to figure out how to make that possible.

It was harder than she expected. The first step was reaching out to their local Community Care Access Centre, the organization that coordinates public home care in Ontario. The family got a case manager who “wasn’t a great fit” with her mother, says Cavanagh, and they never got a sense of how much help they could expect to get.

Worse, they ended up needing to significantly supplement the CCAC hours with care they paid for privately. And that brought organizational challenges. “You have a visiting nurse from CCAC, you’re seeing your own doctor, you’ve got a couple of personal support workers from two different agencies at CCAC, a support worker from the Victorian Order of Nurses that you’re paying for, another support worker that you’re paying for, and now you’re trying to coordinate all this,” she says. That task of organizing all those health care workers was taxing for her mother, and her dying 75-year-old father found it very frustrating to do multiple assessments and discuss his illness over and over again.

But despite those difficulties, Cavanagh says they’re very happy they were able to keep him at home. “For him, a hospital would have just been a place to go and die,” she says. “Having him home with us was wonderful.”

They were more successful than many families. Palliative care is offered at home, in hospice, or in hospital, and ideally, people would be able to die where they wish, as was the case for Cavanagh’s father. Yet the 2014 Ontario auditor general’s report pointed out that despite the fact that most people prefer to die at home — and that enabling them to do so would cost our health care system at least $600 less per day of care — the majority of Canadians still die in hospital.

That’s likely because we simply don’t have enough hospice beds or home care palliative services. Even in hospitals, there aren’t enough palliative care beds, leaving too many people dying in intensive care units or acute medical wards — nobody’s first choice.

Improving palliative care has been a focus since that auditor general’s report — helped by its being thrust in to the spotlight as part of the debate around medical assistance in dying. And astudy published in in JAMA last year offers a good overview of the problem. It compares palliative care for cancer patients across seven developed countries using data from 2010. Canada did poorly on several markers, having the second-highest rate of people dying in hospital, at 52 percent, and of people having been hospitalized in the last six months of life, at 89 percent. That translates into high costs, at an average of $21,840 for the last six months of people’s lives — the most expensive of all seven countries.

Over the past few years, Ontario has pushed for better palliative care in a variety of ways. So what have we achieved?

‘The postal code lottery’ and differences by disease

Palliative care is often framed as the right to die where, and how, you want to. But it actually includes helping manage a wide range of symptoms, including filling psychological and spiritual needs.

It should also happen during the last year of life, not just the end of life period. A common way to assess whether someone is ready for palliative care is to have the provider ask themselves, “Would I be surprised if this patient passed away within the next year?” That’s thanks in part to increasing evidence that offering palliative care sooner helps improve quality of life and reduce the severity of symptoms.

In Canada, palliative care is being offered earlier, but mostly to cancer patients, where there have been clear calls for palliative care to begin alongside standard treatment, and the progress of the disease can be easier to predict than in other conditions with a high likelihood of death, like advanced heart failure. According to a 2016 Health Quality Ontario report, half of the people who received palliative care in 2014/15 had it only in their last month of life. People with cancer are much more likely to get a palliative care appointment about six months before death than those with frailty and heart failure, who are more likely to have their first palliative care appointment in their last month of life.

“A lot of palliative care is delivered late in life, and also in acute care settings,” says Peter Tanuseputro, an investigator at the Bruyère Research Institute and a scientist at the Institute for Clinical Evaluative Sciences (ICES). “[Those people are] going through the hospital, through the ER. They’re in an acute care bed, and their palliative is consultative.” That’s very different than if it was delivered on a palliative care ward, where nurses and doctors are more experienced at managing symptoms and pain at the end of life.

There is also variation across regions. People who receive palliative home care are more satisfied with their care, and less likely to go to the emergency department, be admitted to hospital, or die in hospital. But HQO reported a wide range in the percentage of people who received palliative home care, from 56% of people in the North Simcoe Muskoka Local Health Integration Network to 31% of people in the North West LHIN. Access also varies by income, with 46% of people in the richest areas getting at least one visit, compared with 39% of people in the poorest neighbourhoods — something Tanuseputro calls “the postal code lottery” of palliative care.

Other research has also shown the importance of money when it comes to home care, pointing out that Canadian families pay around 25 percent of the total cost of palliative care, by privately hiring nurses or personal support workers.

People living in long-term care are another group that often die in hospital unnecessarily — a result of the funding structure of long-term care homes, says Samir Sinha, director of geriatrics at Mount Sinai and the University Health Network of hospitals in Toronto. In the past decade, he says, the type of people living in long-term care homes has shifted significantly to those closer to death and those who are more medically complex. “The challenge that long-term care homes have in Ontario is that they’re still traditionally funded under a model that has not evolved as quickly,” he explains. “They don’t have the kind of funding that can allow them to respond to the needs of people who are being actively palliated.”

Increasing access to palliative care

A 2014 report from Health Quality Ontario, End-of-Life Health Care in Ontario, laid out a road map to how to fix palliative care in the province. It concluded that everyone deserves to choose whether they want to die at home, in a hospice or in a hospital palliative care ward; that advance care planning be discussed early and often; that health-care professionals need more end-of-life training; and that discussions around not doing CPR on people close to death should be commonplace.

That same year, palliative care became an official subspecialty. That’s positive — though it can also endorse the idea that this is an area for specialists only. Instead, all health-care workers should understand the “ABCs of palliative care,” says Hsien Seow, an associate professor of oncology at McMaster University and the Canada Research Chair in Palliative Care and Health System Innovation. “It’s everybody’s business.”

Last year, the Ministry of Health and Long-Term Care created the Ontario Palliative Care Network to develop quality standards and measure improvements around palliative care in the province. “The OPCN is a critically needed initiative,” says Anna Greenberg, vice-president of Health System Performance at Health Quality Ontario. “It combines the right ingredients: formal clinical leadership, developing and implementing quality standards, better use of data and information to support regional and provincial planning, and public reporting to monitor progress.”

Earlier this year, the Ministry of Health also announced it would invest $14 million in hospice care over three years, and last week’s budget included funding for capital costs for hospices as well. About 12% of people who die would be best served by hospices, says Rick Firth, president and CEO of Hospice Palliative Care Ontario, a partner in OPCN. The average length of stay is only 18 days, but they help keep people out of acute care and prevent unnecessary interventions. The new funding from the government will bring the number of hospice beds in Ontario up to 503 — over 1.5 times more than we currently have, but still below the 815 Firth says we need.

The increase in hospice bed numbers is one of the few firm numbers we have in this area. Research by Tanuseputro has pegged overall access to palliative care at about 52% — but it’s a statistic too new to compare to previous years.

Part of the OPCN’s job is to track the data around palliative care, so we’re only now entering the first years of having comprehensive datasets, says Michael Sherar, the OPCN Executive Oversight Co-Chair and president and CEO of Cancer Care Ontario. But he believes that access to palliative care in the province hasn’t changed substantially in the last few years.

Sherar says it’s simply too soon to expect serious improvements in those numbers, but “that the foundational work that we’ve put in now means that they will move and we will start seeing significant improvements over the next three years.”

“We have created the data infrastructure, the accountability, we have engagement with palliative care providers, and have good government commitment to improving palliative care,” he continues. “With all of those critical foundational elements in place, that progress will come quite quickly, and it will be sustainable.”

Data pulled for Healthy Debate by Tanuseputro supports the idea that patients haven’t seen significant progress when it comes to access to palliative home care. The number of people who received palliative home care services actually dropped slightly from 2011 to 2015. And the number of people who had a home palliative care appointment from a physician in the year before they died has gone up, from 9,700 people in 2011, or 15 percent of people who died, to 17,000 in 2015, or 19 percent. “It’s improving, but slowly,” he says. “It’s not exactly leaps and bounds.”

Enter the debate: reply to an existing comment

14 comments

Heather CavanaghMay 4th, 2017 at 2:12 pm

Thank you for a thoughtful, balanced article. This is unfortunately a topic no one in the general public talks about until they find themselves in it. We need to elevate interest and media attention as we will all die and it should be as ‘comfortable’ as possible.

So true Heather,
The problem of not talking about it is that the affected persons, the ill patients have no energy to go public.
Our systems are run by healthy people, the sick are at home, just being sick.
There are also many illnesses that even though a patients death cannot be ‘foreseen’, desperately need palliative like services. They need more than an hour visit once per week.
Many diseases have just as great suffering for longer than the requirements needed by patients as to meet the six month life expectancy.
So why do we get palliative care? Because we are dying or because we are horribly uncomfortable?
There are a lot of people that never see one bit of loving care before they die. And I think that is really the saddest thing.
It is a good thing that it is not remembered, but still, it is well known that being sick and having nowhere to turn will only make you sicker.

Is no-one else a bit concerned that Canada has passed legislation allowing health caregivers to ‘hasten death’, while health legislation and policy across Canada is cutting, reducing and controlling Canadians’ access to active treatment.? By active treatment, I include pain management and pain medications, home care support, nursing home and of course , palliative and terminal care? Is no-one concerned that the lack of appropriate care actually causes suffering, which in turn, propels people toward assisted suicide? Apparently, Canadians have the ‘right to die’ but no corresponding rights to palliative care or any other type of clinical care when we become terminally ill.

Hospice services across the province is heavily dependent upon the generosity of the community to support both the capital costs of building the actual facilities and then for up to 40% of the annual operating costs of both the residential programs and the ‘community’ hospice programs. There is much work to be done in the Province to determine what are the core hospice services and to insure that those who are palliative have access. This article is a good beginning conversation.

I do believe in my “right to die” when I get to that point in my life when there is no other alternative. In these cases, pain medication should be readily available and given more rather than less. I think it’s unacceptable that someone in their last hours or days should suffer at all– it’s just not humane. Unfortunately, the problems in our health care system is across every Province and each one is striving to make it better. Thank you to all the caring people who are striving to do so.

I took a course studying the delivery of palliative care in different European countries. Canada is very far behind most countries there. Everyone should have access when they need it and service not limited by type of disease and not only in the last month of life. We have a very long way to go

(Disclaimer: I’m a family doctor who includes home visits to frail and dying patients as part of my practice. I’m also a provider of medical assistance in dying.)

We certainly are a long way from how palliative care should be delivered in Canada. I fully agree that introducing palliative care at an earlier stage of disease progression (and not to mention for non-cancer diagnoses) is crucial. There are a few challenges that I often face day-to-day:

-When someone is not obviously sick and/or dying, it can be conceptually difficult to accept the idea of planning for a future decline. Many patients with a non-cancer diagnosis (e.g. heart failure, COPD, cirrhosis, to name a few) don’t have a good sense of what their life expectancy might be, or what their disease trajectory might look like. (Of course, in many cases, neither do we, as physicians, given the unpredictability of some of these conditions.) I think part of this is a failure amongst doctors to be frank and educate patients about how potentially serious their medical conditions might be. It’s not an easy conversation to have, but it’s necessary.

-The postal code lottery is alive and well. Here in Toronto, palliative care services are often limited by catchment areas, and what is available in one part of the city may not be available a few blocks away because of arbitrary boundaries imposed by funding agencies. For example, the Dorothy Ley Hospice in the west end of the city has an outstanding pilot program that aims to identify and support patients who are “pre-palliative,” and who might benefit from an early linkage to a hospice. But my patients who live out of their catchment area cannot participate. More consistency across administrative boundaries would be excellent.

-Even when palliative care services are available in a patient’s home, there are times when there is a distinct lack of communication between home care providers and family physicians. A patient of mine may have nurses, physiotherapists, occupational therapists, and social workers assessing and providing services to them, but there’s often no routine communication with me. This is something that I hope will change with the transition out of the CCAC system (though I’m not overly optimistic.)

On the bright side, palliative care has made significant inroads in medical education, and family doctors graduating now are expected to be able to provide end of life care to their patients. Whether or not they choose to is another matter.

Dear Ed,
Thank you for commenting.
I do think patients have a good sense of how sick they are. Obviously no one, not even a physician knows the exact date, time of death until it has happened.
I don’t know of any person that enjoys being sick, nor pretends to be sicker than they are (except possibly some people with colds)
When patients suffer from declining diseases, the patient is the one who knows best. Why in the world would we take it upon ourselves to decide the patients outcome when reported symptoms and QOL are very good indicators of how sick someone is.
To not believe them is simply treating patients as infants, to make decisions for them is not humane.
These diseases mentioned are very serious and it would not serve the patient well to just let them flounder in their discomfort. It is inhumane.

We also live in a death denying society; we choose to ignore things until it is too late. Whether it is the patient or their family, often hospice services (whether residential hospice or community visiting) are not investigated in time. We need doctors to broach the subject early on, changing the language they use so that people don’t see palliative care as “giving up,” rather as simply seeking the support they need. Hospices are not where people go to die; they are where people go to live out their final days. There is a distinct difference that we don’t seem to understand, and it is heartbreaking that so many miss out because they are unaware of the services available.

As stated elsewhere in this site, THIS is not an issue for folks with money. Money will purchase support. This issue is all about those who do not have the money to purchase the needed care and support. Until the majority of people wake up and elect politicians who will do the right thing in terms of health care and spending our money, this (and many other issues related to health and everything else) will continue as they are.

So… either find a way of accumulating the necessary funds to be able to pay for things, OR be kind and hope that your kindness will be returned when you are in need.

I kept this article to re-read… I am a retired nurse, having “worked” for 52 yrs in active nursing.. I worked with many palliative pts., in hospital and in the community.. and through CCAC.. As you will note.. I am an “old-fashioned” nurse (?!).. who believes in good hands-on care.. One frustration.. in later yrs of my nursing practice.. was the “new version” of nursing.. described to me by more than one.. generic Univ ns grad.. It is now a more “computer” practice, and research research research.. but fewer willing to do the actual nursing care, I found.. There are many divisions.. providing care now.. PSW, RPN, no more RN.. just BScN.. often with inadequate “respect” for “lower” divisions of care providers.. I’ve witnessed this.. And, with CCAC- care co-ordinators.. some with NO/limited hands-on experience.. esp. in palliative care.. directing care provided by the nursing agencies.. To say, it is now 2018.. and there is, as one response claims, an adequate data infrastructure.. lets now concentrate on providing adequate actual palliative care.. Too many people in offices.. and not enough at the bedside.. my humble opinion…

My husband was in the hospital fo 29 days, We had 2 bad nurses , I had to straighten them out, Should never had happened, they just don’t care, now my husband is palitive, And has 6 months , i have been taking care of him since 2011, long road, ,Hospice is coming here friday to evaluate him, This is all new to us

Medical assisted death was approved by the Supreme Court provided all Canadians have access to palliative care in the closing years of life. All Canadians do not have this access. The most vulnerable 50% of Canadians will, as time progresses be the Lion’s share of assistance in death, it simply will be a more attractive choice. We are on a slippery slope. Kindness to kill cost way less then kindness to comfort. It’s in the budget.

This document is provided under the terms of a CreativeCommons Attribution Non-commercial Share Alike license. The terms of the license are available at: http://creativecommons.org/licenses/by-nc-sa/3.0/. Attributions are to be made to HealthyDebate.ca, a project under the direction of Dr. Andreas Laupacis, at the Keenan Research Centre, Li Ka Shing Knowledge Institute of St. Michael’s Hospital.